Has anyone started a forum for Chemo in Dec 2008?

I watched Farrah's Story last night. I expected it to really scare me more than it did. The one thing she kept repeating that hit home was that she wanted her life back. We can all relate to that, can't we? It made me feel blessed that we have all started to circle back to our lives, even though we are forever changed.  

Speaking of scary, I'm starting on Femara this weekend. My oncologist pointed out that if I don't have side effects, then he'd worry that it isn't working. So if I feel good, I've got to worry???  

Hey Caroline.  Never mind about looking up that foot sleeve for me.  I found the website I had saved and it won't work for me coz there is no actual toe compression.  Binney recommended I just wrap my toes until I know what's going on instead of investing all that money in a toe cap.  I think she's right.  I'll go to my LE next week so I know how to do it right.  I know you said to get the wraps on e-bay.  Right?

How is everyone feeling? Who is still experiencing side effects, and how's the hair growing?

I still have a dry mouth, although not as bad, and my skin is still super dry. I'm starting to lose toenails now, and my fingernails all look like they'll fall off a 2nd time. My oncologist is stumped by that one. Despite what my surgeon calls successful surgery on my tear ducts nearly 3 weeks ago, my eyes are still watering with no relief.

The good news is that my energy is back, as is my appetite and most of my taste buds.

I have about 6 hairs in each eyebrow, and 4-5 eyelashes per eye. Hair is a little more than an inch in some places and as short as 1/4" in others. With 105 degree weather, I wear the wig only when I am in public.

Hi ladies.

My hair situation isn't changing much.  Lashes and brows are growing but falling just as fast.  My hair is past the stubble stage and it feels nice and soft except for the old man bald spot.  That at least now is all stubbly, so in another few weeks, I should be able to get it all evened out.  It started coming in real black, but I've been outside a lot and it's starting to lighten up quite a bit.  Back to the tedious daily leg shaving in the shower now too. 

When I saw Onc last week I asked for a Medrol pack to get rid of the swelling in my foot.  He said no.  Use compression.  Well, I did a bad thing.  I had some decodron left from chemo and I took it for 4 days.  My foot is just about back to normal.  Onc also gave me Effexor which is an anti depressant that helps with hot flashes.  I can't take Wellbutrin any more coz of the Tamoxifen.  But the Effexor puts me to sleep.  Period.  I think I've slept 16 hours a day for the past 4 days.  I didn't take it today and I feel pretty awake and energized.  Rather disappointing tho as I think that was my last option with getting the hot flashes under control.

Saw my PS today.  He wants to do some revision on one side.  I'm so glad.  We kind of had it out last time I was there coz I wasn't happy with the difference in the two sides.  He kept telling me that not one person's breasts are the same.  So today, he said he needs to open up the outer and lower part of the right pocket to get them to look more the same.   Duh.  That means I won't be able to get nipples till late fall or early winter.  But that's ok.  It's way too hot here now to try to cover all that up.

I'm feeling better and better every day.  Just about back to pre-cancer status.  A little neuropathy still in my feet.  But that seems to be getting a little better.

Does anyone ever get that chemo taste in their mouth yet?  Every once in a while, I just can't eat.  All I can taste is chemo mouth.

Texas, I'm so sorry that your eyes aren't better.  Did he say it could still improve?  Or is he pretty much done with you?  I've started putting polish on my toes with no nails.  Still looks like hell, but what are ya gonna do? 

Hello All - Things here are going pretty well.  My daughter finally apologized to us (for the ear piercing) and as of now things seem to be back to normal.  She went to the movies the other day and came home with a present for me.  She brought me home a bc bracelet.  Which she used her own money.  It was very thoughtful and I was really happy.  Looking forward to the weekend, my Mom is coming to spend a few days with us and were are having our annual 4th of July BBQ.  This is the 1st time we have had a lot of people here since last July.  And they are predicting nice weather!!!! 

I am happy to see everyone is doing well.  I still have really sore feet a lot of the time, and I also have absolutely no memory.  If I don't write things down, I can't remember anything!!!

Happy 4th!!  Hope everyone has a great weekend!

Colleen 

Hi everyone.  As for lingering SE's I still have numbness in my fingertips.  I thought it was fading but really felt it a few days ago.  Geez, 16 wks post chemo too.  My fingernails are looking funky too.  None of them ever fell off, but they don't look the same as they did prechemo.

I hope all of you are doing well.  I hope you have a safe and happy holiday weekend. 

Firni Sorry it took so long to reply, we went away for a week. Oh how nice did that feel! So how's your foot? Let me know if you ever find someone that will do custom sleeves with toes, I doubt mine is ready to go away anytime soon. I got my chemo mouth back the other for a few days, it was driving me crazy, everything & nothing tasted awful. There I thought I was done with that part.

Still dealing with my hand getting completely numb at night. Rads onc is denying that it's caused by rads even though it started during rads! So I'll wait and ask the other onc about it in a few weeks.

Otherwise things are doing well here. Kids have been doing VBS, they went 2 weeks ago, then we left for a week vacation camping in the Catskill, VBS again and for the next 2 weeks, then they're off to Canada for a week to visit with my parents before I head off for a week. I love my boys but after this past year, I must say that it is nice to have little time to myself even if it's only 2-3 hours/day.

Oh, and of course, since we went away for a week to not think once about this past year, on the LAST day of our vacation, my period reappeared Luckily I didn't get my tipycal horrible PMS symptoms, but I was bummed, the one SE I was happy that it was still linguering. So 3 months & 9 days after last chemo, they're back! Am I the first one?

All right, time for hair dye again, roots are getting long, I think its been about 4 weeks since my last dye.

Hi Caroline,  I'm glad you were able to get away and just relax and enjoy.  We always did VBS when we were kids.  It never occurred to me that my mom was trying to have some "me time".  There were 5 of us kids, so I'm sure she needed it!!!!

I had to go to a medical supply who would measure and order the toe cap.  An Rx is required.  The problem for me is that it would cost $300.00 and take 3 weeks to make and send out.  Since my insurance doesn't cover compression garments, I'm opting to just wrap for now.  I went to my LE therapist and she showed me how to wrap my toes.  She also gave me a mild compression tube thing that I can wear over my foot at night.  I see my PCP next week and I'll see if there's anything else to look at regarding the cause of the edema.  The hot weather now and even a warm shower will really bring the swelling up.  I kind of think it is what it is and I'll have to learn to live with it.  Lots of nice shoes I may just have to get rid of.    Sorry you got your period back.  I was almost a year past that when I was diagnosed.  I'd be shocked and horrified it it came back now!

We do have pretty good insurance and since I have reach my max out of pocket this year everything is now free (except for co-pays). I'll have to look into it. I ordered 6 pairs of compression hoses last december when I met my OOP for the year but they go up to me knee and are so hot in the summer. I sure hope for you that it does go away, I know mine won't unless they find a cure for lymphedema. The worse part is not being able to wear the shoes I would like! Summer always makes it worse too.. oh well..

Mandy, how exciting to go to be able to take this trip!!!!!  It's hard to believe that we are all getting to that one year mark within the next few months.  A heck of a year it's been.  Enjoy your trip and celebrate being on the other side of dx.

http://www.healthnews.com/nutrition-diet/healthnews-dozen-top-12-food-additives-remove-from-your-diet-3374.html

Top 12 Food Additives to Remove From Your Diet
Thanks to MSN Health & Fitness contributor Jean Weiss, a list of the most medically questionable and harmful additives in everyday foods has been compiled:
1. Sodium nitrite
2. BHA & BHT
3. Propyl gallate
4. Monosodium glutamate
5. Trans fats
6. Aspartame
7. Acesulfame-K
8. Food colorings (Blue & , Red , Green , Yellow )
9. Olestra
10. Potassium bromate
11. White sugar
12. Sodium chloride

Thanks Simvog and Firni for the good wishes and Simvog thank you also for the food advice.  I don't eat meat but sodium nitrate is sometimes in smoked salmon!!!! So you have to read everything.

Mandy

Sonia, how are you handling the heat? I've noticed that I'm not as able to tolerate it as much as I did before chemo. Of course, Houston is breaking some 100-year-old records so maybe that's part of my problem!

How is everyone doing these days?  Our board has been slow these days....

I had another fill on Tuesday and boy these TE's are starting to bother me.  No pain, just uncomfortable.  Anyone have sleeping suggestions?

Thanks,

Sonia